Ricky’s story – “Dementia has taken a big toll on us”
Ricky’s talks about how his Gran’s dementia diagnosis impacts his whole family and why he is supporting the ‘We live with dementia’ campaign.
Watching my husband change before my eyes
Pratibha shares her experience of caring for her late husband, Narayan Gopala, who lived with vascular dementia and died in 2024.
When I met Gopala at university in Delhi, nearly 65 years ago, I knew very quickly that I’d met my future husband. He was kind, gentle and very intelligent.
I am from the north of India and he is from the south, and although we didn’t share the same language, we connected on a deep level. It is quite unusual for people from opposite ends of India to marry, but I knew he was the one for me. My parents grew very fond of him too. To be honest, he was one of those people that everyone was fond of!
Early signs of dementia
Just over 10 years ago, Gopala began to have issues with his memory.
He had always been such a high achiever and held a very senior position at a large airline company. As he became unable to work, I could see his confidence drop, as his career had always been a big part of his life.
Meanwhile at home, our two children and I were noticing Gopala’s memory issues getting worse. First it was names and addresses. Then it became confusion with directions and orientation. Sometimes I would have to remind him to take a shower, or to brush his teeth. This would lead him to become incredibly frustrated. He would get angry at me, which was so out of character for him. However, I knew deep down he was just angry at his condition and his inability to do things he’d previously done with ease.
After a visit to the GP and some memory tests, Gopala was diagnosed with vascular dementia.
When Gopala started to have incontinence issues, I realised that we needed more support. My daughter and I were unable to keep carrying the load on our own. I organised carers to come and help us a few times a week.
Just when I thought life couldn’t get harder, the saddest part of our dementia journey came when Gopala started to forget me and our two children. He would sometimes get agitated at carers and ask to see his wife. But when I would hold his hand and tell him that I was there, he wouldn’t recognise me. It was heartbreaking.
Moving into a care home and discovering art
Eventually we had to make the difficult decision to move Gopala into full-time care. And while he gradually lost his ability to communicate verbally, he discovered a new way of communicating. He asked for paper and charcoal and began to draw. At first we weren’t quite sure what, or who, he was drawing. But we soon realised he was drawing me, as he remembered me back when we first met in Delhi.
These portraits gave me so much comfort and joy. I still look at them often. Sometimes, you don’t need words to tell people you love them. In these portraits, I saw his love for me.
Gopala died on 13th July 2024 at the age of 86, not long after we celebrated our 60th wedding anniversary.
Remembering the good times
In Hinduism we believe in the concept of karma, that kindness will come back around. But with Gopala’s dementia, I saw him suffer so much over a long period of time. In my lowest times, it made me question how this could happen to such a kind soul and what he did to deserve this. Dementia really is such a cruel disease – not just on the person living with it, but on the whole family.
When I find myself having these negative thoughts, I try and remember all the good years Gopala and I had together. It’s so important to remember the person before the diagnosis.
“I can’t see how any family navigates dementia without an Admiral Nurse”
When Elliott’s father was diagnosed with young onset Alzheimer’s disease in his fifties, family life was changed forever.
You don’t have to do it alone as a young carer – Chloe’s story
Chloe shares her experience of being a young carer for her Mum, who was diagnosed with frontotemporal dementia at 47, and died aged 51.